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This is a repository copy of Reasons for missed appointments with a hepatitis C outreach clinic: A qualitative study.
White Rose Research Online URL for this paper:http://eprints.whiterose.ac.uk/109820/
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Article:
Poll, R., Allmark, P. and Tod, A.M. orcid.org/0000-0001-6336-3747 (2016) Reasons for missed appointments with a hepatitis C outreach clinic: A qualitative study. International Journal of Drug Policy, 39. pp. 130-137. ISSN 0955-3959
https://doi.org/10.1016/j.drugpo.2015.12.027
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Accepted Manuscript
Title: Reasons for missed appointments with a hepatitis C
outreach clinic: a qualitative study
Author: Ray Poll Peter Allmark Angela Mary Tod
PII: S0955-3959(16)30017-2
DOI: http://dx.doi.org/doi:10.1016/j.drugpo.2015.12.027
Reference: DRUPOL 1728
To appear in: International Journal of Drug Policy
Received date: 16-4-2015
Revised date: 7-11-2015
Accepted date: 10-12-2015
Please cite this article as: Poll, R., Allmark, P., and Tod, A. M.,Reasons for missed
appointments with a hepatitis C outreach clinic: a qualitative study, International
Journal of Drug Policy (2016), http://dx.doi.org/10.1016/j.drugpo.2015.12.027
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Reasons for missed appointments with a hepatitis C outreach clinic: a
qualitative study.
Dr Ray Polla (corresponding author)
aDepartment of Infection and Tropical Medicine, The Royal Hallamshire Hospital, Glossop
Road, Sheffield S10 2JF, England, United Kingdom
Dr Peter Allmark
bCentre for Health and Social Care Research, Montgomery House, 32 Collegiate Crescent,
Collegiate Campus, Sheffield S10 2BP, England, United Kingdom
Professor Angela Mary Tod
cFaculty of Human and Medical Sciences, Room 5.319, Jean McFarlane Building, Oxford
Road, Manchester M13 9PL, England, United Kingdom
aSheffield Teaching Hospitals NHS Foundation Trust
bSheffield Hallam University
cUniversity of Manchester
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Reasons for missed appointments with a hepatitis C outreach clinic: a
qualitative study
Abstract
Background
Non-attendance in drug service hepatitis C outreach clinics means clients miss the
opportunity of being given lifestyle advice and referral to hospital for assessment and
treatment. A similar problem is experienced in other services throughout the UK. A
qualitative study was undertaken to investigate the problem.
Methods
Clients with a history of not attending the outreach clinic were invited to participate during a
routine drug clinic appointment. A contact details sheet with a preferred telephone number
was completed by those agreeing to take part. Verbal consent was taken and a telephone
interview took place. The participants were remunerated for taking part with a five pounds
high street voucher. The ‘framework method’ was used to analyse the data with key themes
identified.
Results
Twenty-eight telephone interviews were undertaken from April to June 2012. All the clients
gave ‘prima-facie’ reasons for non-attendance including ‘not a priority’ and ‘forgot’.
However, the study indicates these are insufficient to explain the various experiences and
influences. Underlying reasons that impacted upon attendance were identified. These
reasons relate to (i) client characteristics e.g. ‘priority’ to score drugs and the ‘cost of travel’
(ii) clinic service e.g. ‘difficult journey’ to the clinic and timing of the ‘appointment’. The
reasons operated within a complex context where other factors had an impact including
addiction, welfare policy, stigma and the nature of hepatitis C itself.
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Conclusion
The study revealed that beneath apparently simple explanations for non-attendance, such as
clients' chaotic lifestyle resulting in them forgetting or not being bothered to attend, there
were far more complex and varied underlying reasons. This has important implications for
drug policy including the need to better incorporate clients’ perspectives. Policy that is
based only on the simple, surface reasons is unlikely to be effective.
Keywords
Hepatitis C, missed appointments, reasons, outreach, drug use, telephone interviews
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Background
Hepatitis C is a blood-borne virus which primarily affects the liver. In the UK people who
inject drugs (PWID) are at greatest risk of infection. Approximately half of all PWID have
been infected with hepatitis C through the sharing of blood contaminated equipment (e.g.
syringes, needles, spoons, filters and water) (Public Health England [PHE], 2014).
Individuals are also at risk of infection if they have received medical or dental treatment
abroad in countries where hepatitis C is common and infection control inadequate. For
example, there is a higher prevalence of hepatitis C infection among people of Asian or
British Asian (2.3%) and Eastern European (5.1%) origin living in England (PHE, 2014).
Other less common routes of transmission in the UK include: from an infected mother to her
baby, unprotected sex with a hepatitis C-positive partner (although this increases if the
infected person is also HIV positive), tattooing, skin piercing or acupuncture using unsterile
equipment, and sharing razors or toothbrushes contaminated with infected blood. However,
the key population affected by hepatitis C in the UK are PWID.
Without treatment, chronic hepatitis C can cause advanced liver disease (cirrhosis), liver
cancer (hepatocellular carcinoma [HCC]) and thus sometimes death (World Health
Organisation [WHO], 2014). As such, people with hepatitis C need to engage with health
services for specialist medical assessment, advice about lifestyle changes to reduce further
harm to the liver and to avoid infecting others, and to receive curative antiviral therapy
(Department of Health [DoH], 2002).
Non-attendance for initial outpatient appointments at hepatitis C clinics is ‘high’, median per
‘comprehensive service provider’ (CSP) being 10-24% (Parkes et al, 2006). Furthermore,
attendance declines from diagnosis to treatment. The CSPs are units across the UK mainly
led by Hepatologists and Infectious Disease physicians who devote some of their clinical
time (with support from nurses) providing assessment, care and treatment for infected
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people. Fifty percent of CSPs see more than 40 new patients a year. One quarter of CSPs
have outreach services, largely located in prisons or drug and alcohol services (Parkes et al,
2006). However, there are no data on non-attendance in the latter.
In the North of England, two hospital facilitated hepatitis C outreach clinics located within
drug treatment services were established to increase diagnosis rates and subsequent
attendance at the hospital clinic. The outreach clinics were run by the nurse consultant from
the hospital team and clients arranged an appointment via the drug clinic. Occasionally
clients would be seen without an appointment or drop-in if there was a vacant appointment
slot. The two outreach clinics were run fortnightly on different days and times i.e. morning or
afternoon respectively. Over time, diagnosis rates had improved (with more testing being
done by the drug service staff). However, non-attendance (up to 60%) in the outreach
clinics meant clients missed the opportunity of referral by this route to the hospital for care
and treatment. As such, the non-attendance that helped stimulate the formation of outreach
clinics remained a problem for those clinics themselves.
To explain non-attendance by PWID with hepatitis C, the phrases ‘chaotic lifestyle’ and
‘hard-to-reach’ have been used (Moriarty et al, 2001; Irving et al, 2006; Parkes et al, 2006;
Bruggmann, 2012; Hepatitis C Trust, 2013; Mravčík et al, 2013; Scottish Intercollegiate
Guidelines Network [SIGN], 2013). These phrases can imply blame of patients for missed
appointments; the former particularly suggests there is little that can be done to improve
attendance.
Despite this blame hypothesis, non-attendance in non-outreach settings has been
investigated. A hospital clinic in the North of England found no differences between PWID
with hepatitis C that did or did not attend (Cousins et al, 2011). In Scotland, the mean travel
time of 20 minutes to a specialist centre was not found to be a factor for non-attendance but
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other factors were identified: living in more deprived areas; younger age; male gender;
current or past injecting drug use; excess alcohol consumption (more than 21 units per
week); and higher body mass index (Astell-Burt et al, 2012). A qualitative study in Canada
(Butt et al, 2013) identified six themes to explain non-attendance (including patients who
delayed or deferred care) throughout the disease course i.e. from primary to specialist care
(see Box 1). The study appeared to include a range of hepatitis C treatment services
including community and walk-in clinics that would be considered ‘outreach settings’. Thus,
a further reflection of the findings from the Butt et al (2013) study is provided at the
beginning of the discussion.
[Insert Box 1 here]
Hence missed appointments are clearly a problem in hepatitis C settings and put those
infected at high risk of significant morbidity and mortality (as well as them running the risk of
infecting others). However, there is a lack of evidence from the UK about the reasons for
missed appointments, particularly in the outreach setting. Although the issue has been
investigated qualitatively in Canada the findings may not be generalisable to the UK due to
different health care systems and cultures; if the reasons for missed appointments were
known then solutions might be put in place. The study reported here aimed to investigate
the non-attendance problem in outreach clinics using qualitative methods in a UK population
and was undertaken as part of a doctorate.
Methods
Ethics approval was granted by the South Yorkshire NHS Research Ethics Committee study
number 12/YH/0078. The methods and techniques of the study including interview
questions were developed with two ex-service users, known as Ambassadors, from the local
Drug and Alcohol Action Team (DAAT). They were invited to comment on the study forms,
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including the participant information leaflet and interview guide, and the best way of getting
participants to speak about non-attendance, including negative things about the service.
Setting
The interview participants were recruited from two drug treatment clinics in a city in the North
of England. ‘Service 1’ was a GP led treatment clinic for clients with non-complex opiate
addiction and was located outside the city centre. 'Service 2’ was run by consultant
psychiatrists, treated clients with complex needs including underlying mental health
problems and was situated closer to the city centre. Both were co-located with the drug
service. These two treatment services were able to provide a range of participants in terms
of age, demographics, drug history, co-morbidity and distance to travel.
Sample
Purposive sampling meant an adequate range of relevant characteristics were included.
These were: age; length of drug use; hepatitis C diagnosis; home; and family and
employment circumstance. Client exclusion criteria included:
Clients who had not missed at least one appointment with the hepatitis C outreach
clinic before April 2011;
Clients who cancelled an appointment, re-booked and attended;
Clients who were not able to or did not want to give informed consent to participate;
and
Clients unable to speak English.
On the basis of guidance on qualitative sampling, it was anticipated that a total sample of
approximately 30 would be sufficient (Baker et al, 2012). This would allow within and cross-
case-orientated analysis reflecting variations within the sample (Sandelowski, 1995). The
final interview sample totalled 28 participants. At this point no new themes, topics or
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concerns were emerging from the data. Saturation was deemed to have been reached and
data collection was stopped (Wallace, 2005)
Identification and recruitment of participants
The interview participants were identified from electronic data kept by the drug service staff
and previous outreach clinic lists. As part of the researcher’s professional role he was able
to view this data as a member of the clients’ care team (and he ran the outreach clinic).
At a routine appointment, at the end of their consultation, the staff of the drug treatment
service offered clients with a history of not attending the outreach clinic an information
leaflet. They invited the client to participate in, and gave a brief explanation of the study.
This enabled any clients with a low level of literacy to talk with a member of staff about the
research. Those interested in participating and who agreed to speak with the researcher
were asked to complete and sign a contact sheet giving their telephone number. These
completed sheets were securely sealed in an envelope and placed in the researcher’s
pigeon-hole to collect. If a client did not have a phone number then a face-to-face interview
at the drug service was offered; in the event, this was arranged on one occasion and the
client did not attend. Details of those declining were recorded to avoid any future requests.
The participants were remunerated for taking part with a £5 high street voucher. The
researcher was well-placed to access this so-called ‘hard-to-reach’ population from a
research perspective because of his close working relationship with the drug service.
Data collection
Twenty-eight telephone interviews were undertaken from April to June 2012. The interviews
were undertaken by telephone rather than face-to-face (see rationale – Box 2). The
telephone interviews were conducted by the researcher at a time convenient to the
participant. The participants had received an information sheet before the telephone call; at
the time of the call before the interview started this information was restated and verbal
consent obtained and recorded. This process had been agreed with the NHS Research
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Ethics Committee owing to the difficulty of obtaining written consent from this client group.
The interviews were taped and downloaded onto a password protected computer. Basic
demographic details were collected. An interview schedule was devised from the related
literature, expert opinion of clinicians and clinical expertise of the researcher, and insights
from the Ambassadors. The schedule comprised four key questions: a) Can you tell me
what made it difficult for you to keep an appointment with the hepatitis C outreach clinic; b) Is
there anything about the clinic environment or the way that people are treated that may
influence if they turn up; c) What do you think are the reasons for other people not attending
the hepatitis C outreach clinic; and d) telephone or text reminders have been tried to improve
attendance at clinics. How do they work? Who would they work for? Why would they work?
In the interviews, the participants were invited to give their own reasons for non-attendance
and also to suggest reasons for non-attendance of others. This was an interview strategy
designed to facilitate response where, for example, a participant was reluctant to own up to
particular reasons. As such, the analysis did not focus on any difference between the two
types of question. As it was, there seemed little difference between answers to the two
types anyway.
[Insert Box 2 here]
Data analysis
The interviews were transcribed verbatim by a medical secretary covered by a confidentiality
agreement. The researcher subsequently read each transcript alongside the relevant tape
for accuracy. The ‘framework method’ was used to analyse the client interviews (Ritchie et
al, 2003). This is a well-established process of thematic review that involves coding,
developing and applying an analytical framework, charting and sorting the material into key
issues and themes. The background literature was used to devise the initial analytical
framework. This comprised of the themes: drug use/addiction; poverty; services;
psychosocial; hepatitis C – beliefs and expectations; diagnosis and testing; others; and
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solutions. As well as being a practical means of reducing the data, summarising the data
during ‘charting’ allowed the supervisors of the study to engage with the data and offer their
viewpoints without needing to read all the transcripts (Gale et al, 2013). Charting also
ensured that close attention was paid to describing the data using the participants’ words
and accounts in the first instance, before moving onto interpretation. The interpretation of
the data (last stage of the framework) lends itself to explanation of phenomena (such as
missed appointments) particularly if the data are rich enough (Gale et al, 2013).
Results
Demographic information is summarised in Table 1.
[Insert Table 1 here]
All the clients gave surface or ‘prima-facie’ reasons for non-attendance: ‘not a priority’;
‘forgot’; ‘not bothered’ and ‘others’ e.g. felt ill. However, the study revealed the reasons for
forgetting or not being bothered which varied greatly between clients. These reasons
themselves operated within a complex context of factors including welfare policy, addiction,
stigma, and importantly idiosyncratic features of hepatitis C itself (see Figure 1: Thematic
framework). The participants typically gave multiple factors for not keeping appointments.
[Insert Figure 1 here]
Reasons for non-attendance
The reasons for non-attendance are categorised under the themes: (i) ‘client characteristics’
and (ii) ‘clinic service’. For the full thematic schema and all the reasons for non-attendance,
see Table 2.
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[Insert Table 2 here]
(i) Client characteristics
Substance misusing lifestyle
The participants reported using drugs (sometimes alcohol) as a ‘priority’ over attending
appointments to avoid suffering the effects of withdrawal; (this was also the main factor
influencing the prima-facie reason ‘not a priority’). The participants described not being able
to go for an appointment until they felt well. For example:
“… I need time to get a drink to sort myself out because I’m ill if I don’t have that”. (P14, 33
yrs)
Further, prior to scoring drugs, the participants may have had every intention to attend the
appointment afterward but, scoring had taken longer than they planned.
“… I used to miss appointments because I were dependent on drugs … I might planned it to
obtain drugs before my appointment time with drug dealers and it never goes to plan so
that’s why I used to be late …”. (P8, 26 yrs)
Other factors (see Table 2) linked to a ‘substance misusing lifestyle’ included: ‘multiple
appointments’ with other agencies or services and prioritising which to attend and being
‘high’ which were both influential in forgetting the clinic appointment. The effect of drug use
and being ‘high’ was also a factor in helping people to deny having hepatitis C. The
participants talked about trying to pretend or forget about having the infection. They did not
want to be reminded of it because: they were scared of other people knowing they were
infected due to the stigma it carried; believed the treatment was not curative and were
scared of the side-effects; and wanted to avoid suffering from low mood and being suicidal
again.
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“… I think that’s sort of one of the reasons that people probably just being off their heads, not
really accepting what’s going off or just forgetting about it because they’re still using stuff ”.
(P6, 22 yrs)
Further, the asymptomatic nature of hepatitis C impacted on denial of being infected and
made it easy to put to the back of one’s mind. For other participants the absence of
symptoms made them “think twice” about going for a test, and taking time off work to keep
an appointment. One participant said it was okay to delay attending for treatment until they
became “sick”.
Other reasons linked to a ‘substance misusing lifestyle’ were spent ‘money’ on drugs and did
not have the bus fare to attend; and ‘crime’ such as keeping a low profile to avoid detection
by the police, having to appear in court and being in prison. Thus, due to a number of
factors it would appear that the clinic was ‘hard-to-reach’.
Co-morbidity
Participants with ‘physical co-morbidity’ reported having ‘bad or sore legs’ and they had
difficulty with walking. For some, this was a drug use consequence, and caused poor
circulation, pain, abscesses and swelling probably due to previous deep vein thrombi.
“… sometimes I haven’t got the bus fare to get there and back and I don’t feel like walking
there and back because I’ve got bad legs as it is to be honest”. (P16, 39 yrs)
A further physical consequence of drug use reported by the participants, and a reason for
not attending, was a blood test was needed to confirm hepatitis C and they had ‘poor veins’.
The participants described several attempts by staff to get blood, often unsuccessfully,
because staff did not listen to clients about where best to locate a vein and may have used
needles that were too big.
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“… we hate it, absolutely hate it. It takes ages to get any kind of blood out even a dribble and
when you tell somebody where to go they’ll be going oh no, no, no like they know best but
you end up coming out looking like that thing off … with cotton wool balls all over us where
we’ve been speared a million times”. (P3, 42yrs)
Additional factors related to testing for hepatitis C and not turning up were being scared of a
positive diagnosis because they believed the infection was not curable, that it resulted in
premature death and they would feel ashamed if they were infected because of perceived
stigma.
Other factors (see Table 2) for ‘physical co-morbidity’ and missed appointments included: a
‘short illness’ which led to forgetting the appointment or to notify the clinic of their absence;
and a period of ‘long illness’ which meant being unable to travel to the clinic or needing to
resolve this before hepatitis C.
Participants with ‘psychological co-morbidity’ indicated that suffering from ‘agoraphobia’ was
a non-attendance reason. They described fears of leaving the house and meeting people
(including workers they did not know), having panic attacks and staying in their own area to
avoid the city and “crowds”.
“I don’t go out a lot. I mean I go out every day but it’s only in my area. I don’t go to town. I am
not right good with crowds … I am not right good you know I get I feel closed in … I don’t like
being in big areas you know like when I go to town I don’t like it, I feel everybody’s rushing at
me I start to panic. I don’t like being in that kind of place for too long so I tend to you know
stay local you know where I know my area”. (P21, 41 yrs)
Other factors (see Table 2) relating to ‘psychological co-morbidity’ included: suffering from
‘depression’ and lacking the motivation to do things or face people; suffering from a ‘mental
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illness’ and taking medication which caused excessive tiredness and not being awake until
the afternoon; and having a ‘bad day’.
In summary, it would appear that due to physical and psychological factors, and the stigma
of hepatitis C, that the journey to the clinic was difficult and it was hard-to-reach.
Income
Most of the participants received state benefits (see Table 1) with some having their
payments reduced because of recent welfare reforms. In addition, a small number were
having money deducted to pay off arrears. The participants said the high ‘cost of travel’
contributed to non-attendance.
“Not having enough money to get to catch the bus there. If they haven’t got enough money
then maybe they might not be able to come from where they live. If they come from [part of
the city] and you have to come all the way down to the [name of the hospital] it’s a long way
without having any money in your pocket isn’t it?” (P7, 39 yrs)
Other factors (see Table 2) for missed appointments linked to ‘income’ included ‘phone’
which was sold to get money for drugs due to the cravings of addiction or not having enough
money to put credit on it which meant being unable to ring the clinic and made it hard-to-
reach or to receive appointment reminders. Also, ‘work’ and being unable to take time off
because: embarrassed telling their employer about having hepatitis C due to its stigmatising
nature and not feeling unwell due to the asymptomatic nature of the infection; would lose
pay; busy and forgot the appointment, and working far away. For one participant who did
not always get his bus fare reimbursed by the clinic he had ‘other priorities’ to spend his
money on.
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Social networks
Having ‘children’ was a reason for non-attendance due to competing demands. The
participants explained that: there might not be anyone else to look after them; they needed
collecting from school or contact with their child arranged through social services was on
weekdays and not at the weekend.
Other reasons (see Table 2) for ‘social networks’ and non-attendance included: being ‘busy’
due to social events or other activities; and ‘non-disclosure’ and avoiding talking about
hepatitis C with other people because of perceived stigma and they felt “dirty”.
(ii) Clinic service
The second theme comprised of factors about where and how the clinic operated.
Location
As previously highlighted participants suggested that it was a ‘difficult journey’ to the
outreach clinic. The long ‘distance’ involved getting two buses which can be troublesome.
“Yes, but living out here you have to change buses and all that carry on”. (P1, 63 yrs)
The participants gave other factors (see Table 2) which meant it was a ‘difficult journey’.
The factors that create a difficult journey are not straightforward or the same as those for
staff. For example, having to rely on a lift due to difficulty walking, making sure they did not
go into town to score drugs with past drug using acquaintances, having poor veins and
potential difficulties with a blood test, and being scared of testing positive for hepatitis C
because of stigma.
Other factors for missed appointments linked to ‘location’ were: ‘relationship with clients’
whereby people wanted to avoid meeting other clients in the clinic because of problems
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between them including being tempted to score drugs; ‘not hospital’ where some people may
prefer to go about their hepatitis C because it was where they managed to get a blood
sample, it was simpler to explain to other people where they were going and the
appointment may be taken more seriously. One participant was concerned about
‘confidentiality’, seeing the nurse from the hospital team and being seen by other clients.
Thus, even within a drug treatment clinic it would appear that people perceive stigma within
their own community.
Delivery
Some participants reported that not getting ‘reimbursement’ of travel costs was a factor for
non-attendance. They did not have the correct and in-date letter from the benefit office and
that obtaining it could involve waiting in a long queue.
“… when I get there I ask for bus fare back and they can’t give it to me because I haven’t got
a letter from the social. … they’ve already seen a letter from the social and nothing has
changed since then. … It is a bit of a pain because I have to go to the social, wait in a queue
sometimes it’s right long, massive, wait for a letter and then go to [name of drug clinic]. It’s a
bit of a headache to be honest”. (P16, 39 yrs)
The participants also gave issues (see Table 2) related to the ‘appointment’. One of these
was being expected to attend the outreach clinic on a ‘different appointment’ to the one for
their substitution treatment script. This finding seems unsurprising when participants
reported already having ‘multiple appointments’ and having to decide which to prioritise and
attend. There were a variety of other factors which were not straightforward or simply due to
the time of day or not having it written down.
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Discussion
Despite a different health system and culture the findings from the research into non-
attendance in hepatitis C in Canada (Butt et al, 2013) appear to largely concur with those in
this study. However, there appear to be a small number of factors which were not identified
in the latter. These factors were:
Within the ‘self-protection’ theme the requirement of frequent in-person visits to the
clinic when ill due to treatment side-effects;
Under ‘knowledge gaps’ reported by patients, being able to differentiate symptoms
related to hepatitis C from other conditions, how often a person needed to be
monitored by a health professional and how to self-manage the disease; and
Within ‘access to services’ the long wait to see a hepatitis C specialist or a worker
from a support service such as social work, mental health or addiction services.
Current explanations for missed appointments in the setting of hepatitis C in the literature
(including those of a prima-facie nature) insufficiently describe why people miss
appointments. This study provides in depth evidence to explain the complexity of why
people do not attend appointments including the underlying reasons for some of these
inadequate explanations.
The notions that individuals lead ‘chaotic lifestyles’ and that hepatitis C is ‘not a priority’ for
PWID are frequently used by staff and commentators to explain poor uptake of screening
and lack of engagement with health services and treatment amongst PWID with hepatitis C
(Irving et al, 2006; Parkes et al, 2006; Mravčík et al, 2013; SIGN, 2013). This study gives
some insight and in part challenges this. For example, the clients’ first priority was often to
score drugs. It was necessary largely to avoid suffering from withdrawal and it may have
taken longer than planned to obtain drugs. In such cases, the participants arguably had
well-ordered lives but the organisational focus was on getting drugs above all else. Thus,
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what to outsiders looks like a chaotic lifestyle is to those within it well organised around an
overwhelming drug-addiction-driven priority. Further, this study revealed numerous different
explanations for prima-facie reasons including forgetting. The underlying explanations for
forgot included: having appointments with other agencies e.g. housing, probation and the job
centre to remember and attend; using drugs; being busy at work and looking after children.
This has important implications for policy because when the reasons for missed
appointments are not known sufficiently then the solutions to improve attendance and the
redesign of services may be inadequate. For example, the use of text or telephone
reminders adopted by many services is likely to have limited effectiveness in this setting.
This study also revealed the wide range and variability of peoples’ experience of missed
appointments. Typically, each participant gave many reasons for not keeping an
appointment across and within the two key themes identified. In addition, the factors or sub-
themes were experienced differently by the participants; for example the explanation around
‘crime’ comprised a number of experiences such as having to keep a low profile from the
police, appearing in court or being in prison. Thus, numerous factors for not turning up to
appointments were played out in different ways in different combinations by different people.
The reasons always played out in a complex context of factors including addiction, welfare
policy, stigma and social inequalities (Paterson et al, 2007; Mouton, 2011; Stewart et al,
2012; Harris et al, 2013; Treloar et al, 2013). There is evidence of several structural factors
within hospital settings that promote stigmatisation of drug users with hepatitis C (Paterson
et al, 2013) that were highlighted in this study including being seen by others in the waiting
room with the nurse from the hospital hepatitis C clinic. It may also be the case that a factor
like ‘delivery’ and ‘reimbursement’ could be seen as an individual (lack of income) or a wider
contextual (poverty) theme. Policy-makers need to take into account the wide variability of
factors and the wider determinants of health that contribute to missed appointments in this
setting. Solutions do not adequately address the complexity of the problem where they
focus solely or primarily on individual lifestyles and behaviour.
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The findings of the study reveal the importance of where and how services are delivered.
However, in contrast to other literature for hepatitis C and related groups where the distance
and location are cited as contributing to missed appointments (Hayter, 2005; Morrison et al,
2011; Butt et al, 2013) this research based on the perspectives of clients revealed the
complexity of what is meant by a term such as a ‘difficult journey’. The factors that made for
a difficult journey include: having to get two buses; the timing of the appointment, such as
whether it was morning or afternoon; whether the appointment was on a different day to the
clients’ substitution treatment script; the cost of travel and difficulties with reimbursement;
and physical and psychological co-morbidity such as problems with walking and suffering
from agoraphobia which for some meant relying on a lift. In a sense all missed
appointments are the product of a difficult journey – this study and others shows how much
this so. Again as a prima-facie reason for non-attendance or other non-compliance it is often
reported that PWID with hepatitis C are ‘hard-to-reach’ (Moriarty et al, 2001; Parkes et al,
2006; Bruggmann, 2012; Hepatitis C Trust, 2013). But this study indicates it is arguably
services rather than clients that are hard-to-reach. Currently many services are co-located
within drug services on the assumption that this makes them more accessible to clients but
this research identified numerous factors which challenge this such as avoidance of other
PWID and of the drug using lifestyle.
Finally, advances in technology and treatment in hepatitis C continually evolve. It is
important to remember that clients’ information and education needs to reflect these
developments. For example, the arrival of new drugs which not only offers improved rates of
cure for most patients but also means shorter duration of treatment and greater tolerability in
the absence of interferon related side-effects for some patients (National Institute for Health
and Care Excellence [NICE], 2015). In addition, the availability of a Fibroscan® test, a non-
invasive scan using sound waves to measure liver stiffness – a surrogate marker for scarring
(fibrosis) of the liver has been used by some services for a few years. Thus, the beliefs and
barriers around treatment expressed in this study need to be addressed by new information
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and service delivery strategies. The role for peers and peer mentors is something that has
been identified in the literature (Australian Injecting and Illicit Drug Users League [AIVL],
2010). It is suggested that well-resourced and properly supported peer support models will
reduce a number of barriers to care and treatment including: reducing the intimidating nature
of the hospital setting; and supporting people through the treatment contemplation phase
and lowering treatment anxiety.
As has been illustrated a strength of this qualitative study is the depth of insight it offers into
clients’ experiences and reasons for missed appointments. Insofar as this is a qualitative
study, the findings are not straightforwardly generalisable to other services. Nonetheless,
the findings form the basis for a discussion about ways to change service delivery to improve
attendance which can then be evaluated with further studies. Again, there will be no one
solution to help improve attendance but a number of solutions will be required, therefore any
intervention will need to take into account the complexity of non-attendance. Thus, this
study provides valuable insight into the reasons for missed appointments that can feed into
the ‘development ‘stage of the Medical Research Council [MRC] framework for complex
interventions (MRC, 2000; MRC, 2006).
Conclusions
The apparently simple phenomenon of non-attendance at hepatitis C outreach clinics is
often given simple catch-all explanations relating to the chaotic drug-using lifestyle of clients.
And the clients themselves give simple prima-facie reasons that accord with these
explanations. Such simplicity is deceptive and can be hazardous for policy-makers.
Investment in a reminder system to tackle people forgetting to attend may be wasted where
such ‘forgetting’ is a manifestation of many other factors, such as prioritisation of obtaining
drugs. This study provides detail on the complex factors that underlie the surface reasons
for non-attendance. Some of these do not sit neatly together. For example, while some
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clients disliked multiple appointments and valued getting a script at the same time as their
outreach appointment, others found the placing alongside of drug and hepatitis clinics a
problem if they were trying to avoid getting caught up again in a drug using lifestyle. As
such, the policy implications of this study are not straightforward. Thus, whilst the recent
advances in treatment have been well received by clinical services the capability for them to
deliver the new drugs remains a problem. The findings of this study provide a basis for the
development of policies grounded in a more complex picture than that usually provided.
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Table 1: Participant characteristics
Characteristics No. of Participants
Demographic
Male 23/28 (82%)
Female 5/28 (18%)
Age range 22 – 63 years (median 39 years)
Had partner 7/9 (78%)
No partner 2/9 (22%)
Had children 12
Lived with others 10/14 (72%)
Lived in hostel 2/14 (14%)
Lived alone 2/14 (14%)
Working 4/17 (24%)
On benefits 13/17 (76%)
Drug use
Within last few months 2/14 (14%)
Not recent 12/14 (86%)
Hepatitis C status
Chronic infection 21/26 (81%)
Past infection 3/26 (12%)
Not sure 2/26 (7%)
The denominator varies because not all information was available from all clients.
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Table 2: Full thematic schema – Non-attendance at drug service hepatitis C outreach clinics
‘Prima-facie’ reasons
Client Characteristics Clinic Service
Not a priority
Forgot
Not Bothered
Others
> Poor
motivation
> Felt ill
> Weather
> No reason
Substance misusing
lifestyle
> Priority
- Withdrawal
> Busy
> Multiple
appointments
> Money
> High
> Psychosocial
> Homeless
> Crime
> Avoid town
> Start life
Income
> Cost of travel
> Phone
> Work
> Other priorities
Co-morbidity
> Physical
- Bad/sore legs
- Poor veins
- Short illness
- Long illness
> Psychological
- Agoraphobia
- Depression
- Mental illness
- Bad day
Social networks
> Children
> Busy
> Non-disclosure
Location
Difficult journey
- Distance
- Rely on lift
- No transport
- No bus stop
- Bus
Relationship with
clients
Not hospital
Confidentiality
Delivery
> Re-imbursement
> Appointment
- Not morning
- Waiting
- Different
appointment
- No card/letter
- Lost paper
- Wrong date
- “Counselling”
- Drug clinic nurse
> Relationship with
staff
> Entrance
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Figure 1: Thematic Framework – Reasons for non-attendance at drug service hepatitis C outreach clinics
Wider context
• Nature of hepatitis C
• Welfare policy
• Addiction
• Stigma
• Drug policy
• Criminal justice
system
• Health policy
Client characteristics
• Substance misusing
lifestyle
• Co-morbidity
• Income
• Social networks
Clinic Service
• Location
• Delivery
Prima Facie reasons
• Not a priority
• Forgot
• Not bothered
• Others
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Conflict of Interest Statement
The authors declare they have no conflict of interests.
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Box 1: Themes for non-attendance (Butt et al, 2013)
perceived to be treated differently by others following disclosure of hepatitis C;
patients weighed up the benefits of attending;
patients had multiple and sometimes conflicting priorities in their lives;
deficits in knowledge about hepatitis C;
‘system’ factors meaning the service was difficult to access;
‘system’ factors impacting on patients’ ability to engage with care.
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Box 2: Rationale for telephone interviews
the nature of the research topic meant participants may not turn up for an interview;
PWID may live in parts of the city which might be considered unsafe to visit for face-
to-face interviews (Marcus et al, 1986);
the cost of undertaking telephone interviews, in terms of time, effort and money, is
lower than face-to-face interviews (Denscombe, 2003);
the relative anonymity of telephone interviews, lack of face-to-face contact and the
establishment of confidentiality may enable participants to talk honestly and openly
about their experiences (Carr et al, 2001); and
most of the clients, like most of the general population, were regular users of mobile
and land-line phones and so familiar and comfortable with them.